My FI has post-viral chronic fatigue syndrome:-( advice?

Just hoping to get some support from any bees with chronic fatigue or with SOs with this illness. My FI contracted Ross River Virus around August last year (from a mosquito bite) and has been off work since. Most people have around 6 weeks off with the virus, but he just wasn’t getting better. He tried to return to work in January, but after a week needed time off again and his school wasn’t very supportive (we are both teachers). Anyway, we are getting married in December and I never thought he would still be unwell come the end of this year! My heart goes out to him – he is so frustrated and exhausted and worried about not working. Needless to say, it has been a financial strain but we are managing okay short term. Postponing the wedding doesn’t make sense financially (as we will lose money), and my FI thinks he will get through the day ok. He says he will feel much worse if we cancel (it is a small wedding of 30 people so hopefully casual and not too draining). I am more looking for advice/treatment that might help relieve his symptoms and help his recovery long term.

Also, I have heard only 5% of people fully recover but I am going to ignore that statistic and focus on the day to day.

Please no advice to re-think marrying him. I told my sister today that I feel like my soul is in his tummy, and his soul is in mine. There are more important things than money and fancy things. I desparately wish he wasn’t sick, but if our roles were reversed, I would be heartbroken if he left my side. And he never would.

ne11y23: I’m sorry to hear this; CFS is tough to deal with for both the sufferer and those around them. I had post – viral CFS following glandular fever when I was 15 and it lasted about 2 years; since then I’ve been prone to it and I had it again a couple of years ago when I was suffering with chronic pain (the two often go hand it hand).

My advice for you would be to be patient. The thing I struggled with most was people being impatient with me/thinking I was lazy etc (and from your post it absolutely doesn’t sound like that’s the case here, so please don’t take offence), or expecting me to be able to do ‘normal’ things and getting irritated when I couldn’t. It really got me down. Other than that, there was nothing people could really do to help TBH.

My advice to your SO would be:

Look at his diet. Cut out junk food, as well as caffeine and alcohol, and pack it with plenty of fresh fruit and veg. A good diet can help to boost energy levels and I personally found it made a reasonable difference.

Try to get some fresh air and exercise daily, even if it’s a 5 minute, slow walk. Again it can help to boost energy. Just don’t go too crazy or do too much.

Pace yourself. When I most recently had it I was juggling the last year of my degree with a part-time job and trying to maintain relationships with my DH, friends, family etc; something had to give, and I had to prioritise. So, my studies and job came first: my studies because that was want I wanted to do long-term, my job because it helped fund them. My social life unfortunately came last, and it meant I would have to carefully weigh things up. If for ex I had a night out with friends, that meant I would be exhausted and uncapable of doing much for several days. So, while I didn’t completely sacrifice my social life as I feel balance is important, it did suffer. I would also assess activities carefully eg a day out sight-seeing would be too draining, whereas a cup of tea and lunch was more manageable

Look into medication. I went on an anti-depressant which had two benefits: it helped boost my energy (it’s commonly prescribed by specialists for CFS) and it also helped my moods as by that point I was beginning to get depressed and feel very bleak, which can be a vicious circle as depression can make you more tired, which makes you more depressed, and so on.

Ultimately there is no cure for CFS, but a lot of people DO recover; I’m not sure where you got the 5% recovery rate from, but most sources I’ve looked at suggest most people recover from post-viral CFS within 2 years. Now, obviously there is a difference between recovery vs full recovery, and as I said I am now somewhat prone to fatigue, and have to be careful. But it doesn’t rule my life and at the moment I would say my energy levels are fairly normal, and they have been for some time.

barbie86: Thank you so much for your response. It has made me feel so much more hopeful!! I got the 5% from google – but hey the internet isn’t always the best source of information. I really appreciate hearing your story. I haven’t always been as patient as I should have been – my FI recently went through a really tough, drawn-out (nearly 5 years!!) divorce and part of me thought he was just emotionally exhausted. I am trying to educate myself more so that I can support and understand him. Thanks for the advice around diet and exercise. He has improved his diet drastically and it does help. I think he finds the thought of returning to work daunting because teaching is full-on and draining even when you are healthy. Your response has given me hope! I will show it to him! I’m so glad you are feeling healthy now.

ne11y23: With work, would they consider letting him return on a part-time basis perhaps? If he could reduce his hours that might make it more manageable, though that might only work if he doesn’t have too long a commute. Or, has he considered tutoring from home to boost your income if he feels that returning to work might not be realistic? Counselling might also help if he’s feeling anxious about returning, and might be another avenue worth exploring, as it could be that physically he would be able to return, but that he’s getting something of a mental block. This is pretty common with people who have/have had CFS, as basically you get really frightened about doing anything to exacerbate it, which can again create something of a vicious cycle of anxiety/depression/fatigue. I recently discovered I’ve been suffering with something called kopophobia, which essentially is a fear of lack of sleep; it was starting to take over my life as I was so scared of not getting enough sleep and ending up with CFS again that my life began to revolve around sleep eg if I was woken up earlier than I wanted to wake up, I would cry hysterically, esp if I had plans for the day (like working a late shift at work). Since I’ve found a name for it I’ve been coping a lot better and seem to have it under control now; I just remind myself that feeling tired sometimes is normal, and won’t kill me. I’m a lot more relaxed about sleep now. But basically this is pretty common and might be something your SO might want to explore.

ne11y23: I’m so sorry to hear this. It is a horrible thing that most people just do not understand and therefore makes it very hard to get help and support from people. I know of this book which is written by a psychologist who recovered from CFS, she also had lots of input from a doctor who had CFS and recovered. I haven’t experienced it myself but have a friend who was recently diagnosed and was reading the book (which was recommended by a psycholgist I know who has worked with people with CFS) in order to understand better

I’m so sorry that you both have to deal with this. I don’t have any real advice though I did want to say that one of my high school teachers ended up with Ross River and Glandular Fever at the same time (super, super shitty). They managed to put a bed in the staff room and every break he had was spent resting. I’me not saying that that is what you should aim for, I just wanted to, share that story, just in case.

ne11y23: I dont have CFS, but did deal with a serious case of major deprssion that left me tired all the time and unable to work (I was a teacher too). It totally sucks! Even after I got better, I realized I couldn’t go back into the classroom. As you know, it is all consuming and there is never any down time (which I think may have been the direct cause of why things got so bad)

I luckily have transitioned into teaching adults and I love it! Sure there are days I miss the energy of students and school. But I love that with adults they take ownership for their own learning. I dont have to deal with grading, homework, detention and parents. I can teach, then leave for the day–nothing looming over my head.

Your FI may need to explore other ways to be a teacher without staying in the classroom. PM me and I can tell you what I teach and how I got here.